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Hi, my name is JRose. I would like to connect with people with the same chronic issues as myself. Women that suffer from endometriosis and people with chronic gastrointestinal related issues. As you all can relate, it’s difficult to sustain friendships and relationships outside of the chronic world we live in.
#MightyTogether #Endometriosis #GastroesophagealRefluxDisease #HiatalHernia

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It’s hard knowing that the chronic pain will get worse and you don’t know when it’ll be. It reminds me of a quote from The Fault in Our Stars- “There's no way of knowing that your last good day is Your Last Good Day. At the time, it is just another good day.” However, it’s even harder when a flare makes you face that reality even more.

I believe my pain is getting worse. Flares are more often, longer lasting, more exhausting, more problematic. It’s a lot harder when I can’t really take painkillers for it.

I got diagnosed with GORD/ gastritis/ hiatal hernia. The symptoms were getting worse, and long story short I had a gastroscopy where I received those dx’s. At the time, my reaction was one of relief. Relief that my symptoms have a physical recognised cause. Because I had just gone through ENT and cardiology where they couldn’t (they could prove the symptoms but not find a cause). Now it’s still relief, but also frustration. It could have been avoided if they had arranged a follow-up appointment when I first went to the doctors about it almost 10 years ago.

Speaking of frustration, I found out that my cholesteatoma actually still appears to be of existence. I was told it was gone, but going over my medical notes it appears this wasn’t the case (besides, it has to be surgically removed to be permanently gone & it wasn’t). Where I keep losing my hearing, I tried mentioning it to the doctor but it got dismissed. Even though there’s things at stake, I’m too tired to fight and get another opinion. Not that I’d be able to anyway- the migraines have caused me to just want to shut down from everything & I only leave the house for appointments.

I’m quite tired of all of it to be honest. It’s exhausting, and being in pain I have the physical exhaustion on top of it. Not sure what else to say or where I was going with this post, but yeah. I’m back?

#ChronicPain #Pain #BackPain #Cholesteatoma #GastroesophagealRefluxDisease #HiatalHernia #Gastritis #ChronicMigraines #Migraine #exhaustion #MentalHealth

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Ugh feeling really yucky tonight

I did a dumb thing today. I ate an entire bag of sea salt and vinegar pork rinds. Now I don't usually have problems with them but I got a new brand to try and they were sooooo acidic. They burned my mouth and brought me to tears. Within an hour I had the worst acid reflux / #GERD symptoms ever! I'm burping up stomach acid and having chest pain.
I get acid reflux because I have a hiatal hernia. I scheduled my appointment for the barium swallow esophagram for March 3rd. We need to see if I need surgery. Meds have never helped make me feel better.
My hips are stiff and hurting but I've got some Percocet so I should feel better soon. I also took an olanzapine to help me sleep tonight. I want to be clear headed for tomorrow cuz I have to do some major cleaning of my apartment. I've got plans for Sunday and will be hosting a guest.
We're going to get my haircut and then we will go to the grocery store. I'm gonna get food for the month. But we're also going to get the ingredients for naan pizza. After we make pizza we are going to watch a movie (or we'll end up watching Bluey, cuz I've never grown up). It's going to be a good day. I'm very excited. I don't see friends very often, maybe once per month if I'm lucky, so this will be nice.
#CheckInWithMe #GERD #AcidReflux #HiatalHernia

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Is there something wrong with my stomach?

Hey, everyone. I hope you’re all okay and staying safe and well.

I have a bit of a strange question. I have several chronic health conditions, including Postural Orthostatic Tachycardia Syndrome, Dysautonomia, Ehler’s Danlos Syndrome, IBS, Non-Alcoholic Fatty Liver Disease, Diabetes, Interstitial Cystitis, Migraines, Gastro-Esophageal Reflux Disease and some mental health difficulties. So there’s a lot of stuff going on.

Anyway, I regularly get stomach aches, or just an iffy stomach in general. I’ll sometimes go 2-5 days with a very minimal amount of food because I’m just not hungry and I feel sick. I’ve had lots of tests and scans and beyond having a Hiatal Hernia and some inflamed blood vessels in my stomach lining, they can’t find a reason behind this. But I’ve recently discovered that when I feel like this and/or I’m bloated… I can get it all to go away by drinking something fizzy. Doesn’t matter what it is, but as long as it’s fizzy… It almost instantly makes it better.

Does anyone have any idea why this is? I do struggle to burp a lot - I always have. When I burp, they are tiny and don’t make much difference, even after I’ve drunk the fizzy stuff. I’m completely open to suggestions. I take all kinds of medication for my IBS and GERD. Antacids, Buscopan, Mebeverine, Metaclopramide (an anti-sickness). But they have a minimal effect when I have these stomach aches, bloating, nausea and loss of appetite.

Thank you all in advance! Any suggestions would be greatly appreciated. Stay safe!

#ChronicPain #chronicillnesswarrior #POTS #EDS #Dysautonomia #GERD #IBS #nausea #NAFLD #LiverDisease #InterstitialCystitis #Diabetes #Migraines #BPD #HiatalHernia #Advice

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Hiatal Hernia #hernia #HiatalHernia #illness

Anyone here able to help me regarding my hiatal hernia diagnosis. What steps should I take? Best medications? Is surgery helpful? #HiatalHerniaRepair #hiatushernia


I saw my PCP today to follow up on the hyper mobility, joint and muscle pain, and weakness. I also brought up that I subluxed my back on Saturday and he didn’t say much about either thing.

Told me my echocardiogram was normal, which is a plus. Told me he will not start me on any more meds as I’m already on 14 but that includes vitamins too. Told me a brace is okay but good luck finding something for joints other than ankle and wrist that are readily available. He did put in a referral to the EDS specialist at the University of Iowa but who knows how long that will take to get set up.

I did mention how my PT didn’t seem to do much. Yeah the pain is diminished, but it was replaced with numbness. I also mentioned the comments PT has made about hyper mobility being normal which I agree with to an extent, but the amount I have isn’t normal. Again he didn’t say much about it.

I guess I’m at a loss for what to do. I know there’s nothing they can do for hyper mobility, but can’t they still do the MRI that I pushed through 6 weeks of PT for? Can’t that help me find a PT that works with hyper mobility and knows how to treat it?

Yes, I know I’m fat. Yes, I have mental health problems. If my weakness, pain, and hyper mobility were related to those things it would’ve been a problem 20 years ago, not just an annoyance and me being “clumsy” with bad posture. Also it would’ve improved when I lost 20lbs a couple months ago, but it didn’t it actually got WORSE!

Sorry about the rant/vent I just don’t know what to do. I’m missing work because of subluxations which I can’t afford. I have a support team, but they’re all paid to support me (therapist, dr, and home aides). I feel lost and alone and my mental health isn’t doing the best.

#EhlersDanlosSyndrome (?) #Hypermobility #Depression #Anxiety #quietborderline #BorderlinePersonalityDisorder #GastroesophagealRefluxDisease #HiatalHernia #dismotility #Gastroparesis #Endometriosis (?) #Anemia #Malabsorption #BingeEatingDisorder #Tachycardia #Hypertension #ChronicPain #weakness


Feedback on experiences with alternative treatments and surgery for sliding hiatal hernia that actual work #HiatalHernia #IrritableBowelSyndromeIBS

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Morning !!!! #CheerMeOn #Migraines #Giggles

Hello 🖐🖐🖐🖐

I can't say Good Morning
Cos I've still got the dam migraine. Day 5 now

I'm ok just completely fed up with left side numbness pins n needles neck pain and of cause the one sided head pain 😥
I think I know what it is too.
But until I get to the headache clinic I can't formally get diagnosed with it.

With the Pandemic how long will that take. Both my local hospital won't take me on.
Neurologist are working on coronavirus patients aren't they!!

But hey what's new with that.
I've been dealing with chronic illnesses for 20 years now. So it's nothing new . Just so so so dam annoying frustrating and making me angry..... 😠😵

Its no ones fault, I'll just carry on as I always do. With a smile and a laugh . I'll cry when I need too, rant and get it out of my system.

So thanks for listening My Mighty Family n Friends.
You are all the very best.
Love you all . Tj 🤗😘🧡❤💚💛😁🖐

#Undiagnosed #frustrated #RareDisease #Arthritis #Migraine #ClusterHeadaches #Anxiety #MightyTogether #Bekindtoyourself #Selfcare #Love #Hope #rant #Vent #talkingtherapy #CheckInWithMe #NeverAlone #SphincterOfOddiDysfunction #PsoriaticArthritis #GastroesophagealRefluxDisease #HiatalHernia #Pain #Chronicpainwarrior

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Am I right?? ( I’m hiding my sick face 😂)

So I’m currently sick now and have all the #COVID19 symptoms except for 1 important thing. I feel some congestion in my chest but only feels like a kitten sitting on my chest, not an Elephant. I can still breathe easily. My fever is about 102. I think it’s the flu and monitoring it. If my breathing changes I will call Dr. My bestie is telling me to get my ass to the hospital now. I’m immune compromised. #AutoimmuneDisease #sjogrens #CoronaVirus #Flu #Fibromyalgia #ChronicPain #Spoonies #HiatalHernia #Depression # Anxiety #PTSD


#Colostomy #BorderlinePersonalityDisorder #Anxiety #TreatmentresistantDepression #HiatalHernia

My landlord is going to come over to my house tomorrow, Sunday, to repair my bathroom. He wants to come in the morning and I don’t really function well until the afternoon. I hate not owning my own home and having to arrange things around the landlords schedule. I’ve been sick from a hiatal hernia for several months now and so my house is messy and very dirty. I’m embarrassed to have anyone come in especially the landlord. I haven’t been well enough to clean or even pick up messes. Depression has me in its grip too. I just want to stay in bed. Actually I don’t want to be alive anymore.